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Being Homeless at the
End of LifeDr Joy Rafferty (Strathcarron Hospice)
Ellie Wagstaff (Marie Curie)
September 2021
Outline
Poll – what service do you work in?
Homelessness in Scotland
Palliative care
Barriers to accessing support
Loss and Bereavement in homelessness
Deaths in homeless projects/hostels
What can be done to make things better?
Resources
Report ‘Dying in the Cold’
Policy context
Questions/discussion
Who is homeless in Scotland?
Definitions
How many people were homeless in Scotland in 2019-
2020?
31,300 - Number of households who applied to local
authorities for homelessness support that were assessed
as homeless (1)
35,600 - Number of adults in those households (1)
15,700 - Number of children in those households (1)
51,300 - Total number of people in those households (1)
60-70,000 – Estimated total number of homeless people in
Scotland (2)
Homelessness is often not
just a housing issue but an
indicator of multiple
severe disadvantage and
complex needs (3)
Why are we thinking about death in
people experiencing homelessness?
Worse health than general population
80% have at least one physical health problem (4)
Higher rates of mortality (2)
Over 200 people die in Scotland each year while homeless (5)
Scotland has the highest rate of homeless deaths in the UK, almost three times that of England and more than three times that of Wales (5)
Average age of death of people experiencing homelessness in Scotland?
39 for women and 43 for men (5)
Condition Prevalence
in homeless
compared to
general
population (6,7)
Heart Disease 6x
Stroke 5x
Cancer 4x
Diabetes 2x
Hepatitis 29x
Chronic
respiratory
problems
2x
Epilepsy 12x
Palliative Care
Palliative care is care provided for people with a life-
limiting condition aiming to improve their quality of life
Holistic approach - looking at meeting:
PHYSICAL NEEDS
PHYSIOLOGICAL NEEDS
SOCIAL/CULTURAL NEEDS
SPIRITUAL NEEDS
Supporting families/friends/care-givers
Emphasis on quality of life, planning
Supporting people to die well, but also to live well until
they die
Palliative Care and Homelessness
People experiencing homelessness have complex palliative care needs
They have significant worse symptoms at end of life than other end of life groups (8)
Yet those experiencing homelessness:
Have poorer access to quality palliative care,
Have worse outcomes
Often die without accessing end of life care (9-12)
People whose health is of concern (13,14)
Parallel planning approach (13,14)
Barriers to accessing support -Tri-morbidity (14)
Problem
substance
use
Mental
health
problems
Physical
health
problems
Barriers to accessing support – Complex trauma
Adverse childhood experiences/complex
trauma/homelessness
85% UK-born people with multiple exclusion homelessness
have experienced childhood trauma and/or exclusion (19)
PTSD common (20)
Trauma affects symptoms (21)
Trauma significantly impacts ability to access and
benefit from services (21)
Barriers to accessing support – Service
Issues
Lack of awareness
Need for additional flexibility & assertive follow up
Continuity of care difficult
Multiple agencies –fragmented care
People experiencing homelessness often socially isolated
Lack of options at end of life
Homelessness = Loss
Health
Self-esteemFriends
Family
Community
Job
Hope
Finances
Dignity
Belongings
‘Normal’ life
Identity
Being part of society
Home
Security
Choices
Privacy
Bereavement
Significant contributory factor in people becoming homeless (15)
Often experience the deaths of others around them (16)
Many frequently think about death (16)
Often shocking, distressing deaths (16)
Often sudden deaths (17)
Often deaths experienced when the person is young (16)
May deal with them in less healthy ways (17)
Increased risk of depression, loneliness, isolation and suicidal thoughts (18)
Deaths in homeless projects/settings
Often retraumatising for other clients (17)
Police involvement, investigations
People working in the homeless sector are often exposed
to the deaths of those they care for, sometimes in difficult
circumstances (22)
High risk of secondary trauma and burnout (23)
Guilt, could we have done more?
Reluctance to have planned palliative care on site
What helps?
Recognising the issues
Bereavement Support
Informal support
Benefit to people experiencing homelessness
Benefit to staff
Adequate support and supervision
Proactive approach
What is being done?
Projects in England
Hostel support workers – trained in bereavement support skills
Service users – trained in bereavement support
Hospice bereavement counsellors going into hostels/homeless projects
Volunteers
Memorials
How can we make things better in Scotland?
Resources
Toolkit (13)
www.homelesspalliativecare.com
Homelessness and EOL care pack (17) – section on bereavement
www.mariecurie.org.uk/globalassets/media/documents/commiss
ioning-our-services/current-partnerships/homeless_report.pdf
Dying in the cold
https://www.mariecurie.org.uk/policy/publications#:~:text=Dyin
g%20in%20the%20Cold%3B%20Being,and%20end%20of%20life%20ca
re
Homelessness in Scottish policy
Commitments/priorities in Programme for Government 2021-22 included:
Investing additional £50m over Parliament to tackle homelessness (£12m
this year)
Homelessness prevention
Inclusion of alcohol and substance misuse support in National Care Service
Bereavement recognised as a cause of homelessness
Pandemic response
1. Scottish Government and Health and Social Care Partnerships to support improved access and provision of palliative and end-of-life care for people experiencing homelessness and terminal illness
2. Palliative care training to be made available for those delivering homelessness services to help identify people who could benefit from palliative care much earlier
3. More tailored bereavement support for both those experiencing homelessness, and homelessness service staff who are often exposed to deaths of those they care for, sometimes in difficult circumstances
Dying in the Cold; Recommendations
The importance of frontline organisations
in bereavement
We are open to partnership opportunities. For
further information/questions about our work
please contact:
Dr Joy Rafferty, Strathcarron Hospice
Ellie Wagstaff, Marie Curie
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(4) Homeless Link, (2014). The unhealthy state of homelessness: health audit results. London: Homeless Link.
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